The invitation, from the Chair of the review herself, Baroness Julia Cumberledge promised that the event would “…be pooling ideas to improve maternity services.”

And that “We are most anxious to hear from all those who have an interest in maternity services; the public, users, commissioners, professionals, and organisations who would like to contribute to our initial thinking. We believe there is much that is exceptional, good, kind, and sensitive to the needs of women and their families. But we also know that there are services which could improve and some which are deeply disappointing with issues that need to be addressed. At this early stage in our work, we do not have any answers but wish to hear from you and your colleagues about your experiences, your thoughts, views and opinions and some possible solutions.”

I was invited because of my work with #HugosLegacy and #MatExp. Hugo was of course present via his handprint on my necklace:

Overall, very well. The room was full of a range of interested parties including consultant obstetricians, midwives, members of the Royal Colleges of Midwives and Obstetricians; various NHS organisations, members of organisations that had been set up in response to personal tragedy (such as the MAMA Academy and the Campaign for Safer Births whom I was pleased to meet but did not have enough time to talk to).

Julia Cumberledge introduced the event by outlining the scope of the review, which is looking at the maternity experience from conception through to six weeks after birth. The timescale for the review raised a chuckle…

The comms plan for the review includes visiting centres across the country so as many voices as possible can be heard.

I loved the ethos for the event:

Be compassionate

Be a friend

Have fun

Assume it’s possible

And so we began with the first round table discussion, looking at issues and solutions.

A few points from the discussion (facilitated by Cathy Warwick) on our table include:

Women need individualised care within a system that genuinely supports the range and variety of experiences and needs women will have

Polarisation – high risk/low risk and between obstetricians and midwives – is very unhelpful

Connected with the above point, for better collaboration and teamwork between midwives and obstetricians – no ‘them’ and ‘us’. There is evidence to prove that training and working together as a team provides positive results.

Dignified care and safe care need not be mutually exclusive (contrary to what some of the polarised debate about where is ‘best’ to give birth may suggest)

Time for training – health professionals want to do the best they can for their patients, but are constrained by lack of time for training. Training on things like team working (such as cross over training between midwives and obstetricians so each can better understand each others’ perspectives) and effective communication would be invaluable.

Targets – such as C-section rates – are a barrier to women receiving care that meets their own individual needs.

Policies, procedures and guidelines are important of course, but there needs to be more encouragement for health professionals to use their own judgement to respond to women’s individual needs without fear of punitive action. This connects to issues relating to training and teamwork – enabling staff to do their jobs and giving them confidence in their practise – in short, empowering them to do their best.

Feedback from the other tables was insightful, including this point that being part of #HugosLegacy was music to my ears…

There needs to be a seamless care pathway to better meet the needs of mums whose babies are in the neonatal unit, as described in my post about what I want the review team to know.

Other points of insight included:

Need to make sure good practice can be shared across hospitals

Need to find ways to make sure care is women-centred – this goes back to tick boxes and things like C-section targets.

Need for better postnatal care.

Need for commissioning that is better connected between CCGs, local authorities, and NHS England.

Need to look at culture – acceptance that innovative vision is the way forward to make the changes that need to happen.

We need to manage risk, risk should not manage us. Antenatal education needs to empower women to make the right choice for them.

We need to eradicate concept of ‘high risk/low risk’.

Women and their families need to be more involved in the creation of pathways

Evaluation methods need to be more useful for service users – and the feedback meaningful.

A woman needs to be seen as a whole person, not a womb with legs – her emotional and psychological needs, for example, need to be considered too.

Three crucial concepts are: language, behaviour, and leadership.

(This is not an exhaustive list, and I may have missed things!)

There are a few issues that bear further exploration, for example: the remit of the review includes experiences up to six weeks after birth. This has the potential to miss two crucial issues: postnatal mental health, and the needs of mothers whose babies are in neonatal care, and/or who suffer a loss. The needs of these women extend well beyond the six week timeframe, and have long-lasting, serious consequences if those needs are not met.

I would be interested to see how the review incorporates these issues.

From a personal point of view, the event gave me a wonderful opportunity to catch up with and meet fantastic people whom I have got to know through social media. I won’t try to name everyone because I usually end up missing people out, but here are some photos…

I loved seeing Alison Baum again (she’s CEO of Best Beginnings, creator of the DVDs for which people so generously donated money for Hugo’s first birthday) and meeting Heidi, founder of the MAMA Academy, of which I am proud to be an ambassador.

The event nearly ended in tears for me, however. Chatting about #MatExp to two ladies at the end of the event led to me sharing my own experience. Asking how long Hugo lived for (35 days), they commented that it was ‘quite a long time’. I disagreed, saying that it was not nearly long enough. Objectively, I know that as Hugo was born at just 24 weeks the fact I got any time with him at all was miraculous, and I am very grateful for every precious moment I had.

But a tip for others when talking to a bereaved mother: DO NOT try to tell the mother that they are in any way ‘lucky’, and especially DO NOT persist in your point of view once the mother has expressed upset.

The women did apologise, saying it’s difficult to know what to say to bereaved parents. Another tip: empathy is key. ASK the parent how they feel, and if you really don’t know what to say, STOP TALKING.

Considering the breadth of experience of women – and men – attending these events will have, taking a moment to consider sensitivity, as well as sensible things to say (and not say!) is crucial.

Fortunately, it did not mar the very constructive and productive day. I hope we can see our thinking translated into real action and change for women and the staff who care for them.

Like this:

June was a month of action for the #MatExp campaign. It was well-named, being so busy I think I could see smoke!

The month got off to a flying start with the launch of the website, the Facebook page, people sharing their action selfies – and so much more!

Women have fed back that:

They want to be treated as an individual

They find terms like ‘low risk’ and ‘high risk’ unhelpfulfor a range of reasons, including that life is rarely black-and-white, and managing expectations.

They understand the evidence behind advice and practice, and do not want to be preached to. They want to be engaged in conversation as an equal, listened to with compassion and empathy, and helped to understand in a way that is useful to them where necessary.

Language is so very important– the words that are used are crucial, as is the intonation and the order you put words in a sentence (eg open questions – “Would you like…” “May I…” rather than “You must…” “I am going to do this to you…”).

Better efforts are required to meet the needs mums whose babies are being cared for in neonatal units – while the mum is in the postnatal ward, and after discharge to make sure she does not miss out on the usual postnatal checks, as this can often fall between the cracks.

Parents who have experienced the death of a baby need better access to support– too many parents are currently left to find their own support, or have to do without. This is unacceptable.

There is a lack of support after birth trauma. Mums have said they’ve been told to ‘get over it’, their experiences invalidated. This is also unacceptable.

More consideration needs to be given to birthing environments. For example, midwife-led centres seem so lovely, with attractive furnishings – and they seem especially lovely in comparison to many hospital labour wards. It can seem like giving birth in hospital (often the only option for ‘high risk’ women) is a punishment for things outside our control! Would it be possible to make hospital labour wards a bit homelier to reduce the disparity? It could help reduce some of the polarisation of opinion about where is the best or safest place to give birth (the best or safest place to give birth is the place that is appropriate for the woman and/or baby’s individual needs, whether than is in hospital, an MLU or at home).

#MatExp is growing from strength to strength. I haven’t had a proper ‘day off’ in ages (there is always something to tweet, something that makes me think “ooh that would be good for #HugosLegacy or #MatExp) – but I am so very proud of being involved in this change platform.

Gill (@WhoseShoes) has written in more detail about change platforms on her blog. I’ve borrowed this image from Gill’s post because I love the analogy. #MatExp really is like a bazaar – full of all sorts of people doing all sorts of things at once; slightly chaotic, full of ideas, activity, buzz, noise – ENERGY!

#MatExp definitely isn’t a cathedral – we don’t follow one particular leader, we don’t follow particular processes, we don’t follow a particular structure – and we don’t talk in a respectful hush.

Please do get involved! It is everyone’s business. Getting involved in #MatExp is like a no obligation quotation. We understand that life ebbs and flows, the time you have or are able to commit will fluctuate. There might not be anything that piques your interest now, but who knows what might happen next month, or in six months’ time (we certainly don’t – we’re making it up as we go along!).

We encourage people to find a way to engage that is relevant to you, where you are in life, the time you have on your hands.

For example, my lovely friend Jennie started a Charity Chat series on her blog, and information on recommended books for children dealing with grief. So much support is out there but it can be difficult to find. This will provide an invaluable resource for other parents and families.

For my part, I am going to continue encouraging people to #saytheirname; to talk about Hugo’s story, and the learning from that; to help reduce the taboo surrounding baby loss; to talk about #MatExp to anyone who will listen.

There are also some exciting ideas in the pipeline. My personal favourite is the possibility of colouring books – to help relieve stress and anxiety, as well as a way of conveying vital messages about pregnancy and related issues to women.

With passion and determination we can together make a difference to the experience of women and babies in maternity services across the country – and to the experience of staff who care for them.

Like this:

The National Maternity Review is going to be assessing current maternity services, and consider how services across the country should change to meet the needs of women and babies.

My son Hugo was born in February 2014 when I was just 24 weeks’ pregnant because I had the rare, life-threatening pregnancy complications HELLP syndrome and preeclampsia. The day before Hugo’s birth, I had been transferred to a specialist hospital two hours away from my home. Hugo died in my arms aged 35 days.

I have written about my experiences extensively in other posts on my blog. To very briefly summarise, there is nothing I can fault in the clinical care either Hugo or I received. However, there were many issues surrounding communication that could have prevented further stress in an already heartbreaking situation.

Hugo’s Legacy is about helping other women who suffer birth trauma, other families with a baby in neonatal care, and parents who lose a baby. Anyone who experiences any of these things deserves compassionate care, and a streamlined system that enables people to get the support they need, rather than battle against it.

So this is what I would like the National Maternity Review to know:

That every woman is individual.

That evidence is vital in the context of providing safe care. But to recognise that evidence cannot tell you everything. Each woman, each situation needs to be considered according to its own merits.

Postnatal care – Hospital

That any new mother separated from her newborn baby for clinical reasons, as Hugo and I were, should be reunited as soon as it is clinically possible.

That no new mother should be left in an intensive care bed, her baby in the neonatal unit fighting for his life, feeling that she is the least important patient on that ward.

There should never be a delay due to interdepartmental squabbling about beds, and to which department the responsibility of taking the mother to see her baby belongs. (This happened to me in intensive care).

That postnatal wards need to have a greater awareness of the needs of mothers whose babies are being cared for in a neonatal unit. It is difficult enough for us being on a ward with women who have their babies with them. Please don’t delay us visiting the neonatal unit to see our babies because of a lack of coordination between maternity and neonatal about timing of rounds. Please don’t force us to make our own meal arrangements because the food that is provided sits getting cold on a tray next to our postnatal bed, while we are spending precious time with our baby.

Me and Hugo

Postnatal care – Community

That better consideration needs to be given to the postnatal care needs of mothers whose baby is in neonatal care, especially when the woman has been transferred to a specialist hospital away from home. The pathways need to be clear, sensible, and appropriate staff aware of them. For example, at first I was told I would need to make the four-hour round trip to see my own GP – impossible. Then I was told I would need to register with a local GP – challenging. Eventually I was able to see a community midwife at the hospital.)

Support for Birth Trauma and Bereavement

That no bereaved parent should return home with empty arms and feel cast adrift from the hospital. To have to find their own support. To have to make telephone call after telephone call explaining an illness they do not yet quite understand and have to say the ‘D’ word again and again. To feel like such a failure as a woman and as a mother. To have to relive everything that happened again and again because services in the 21st century seem not to find the capability to communicate with one another.

That there is support for women who have experienced birth trauma, and for bereaved parents, but people need to know about it – professionals need to know about it so they can direct parents accordingly. Let’s use some of that 21st century communication capability to close those circles, make those connections.

That when a woman makes a complaint about her care, (or feeds back about her care in any way) they are listened to respectfully. That they are made to feel like a human being with emotions with a response that includes words like ‘sorry’ where appropriate. That they do not receive a response that feels like a report to the trust board, a box ticked. That they are reassured learning has been made so no other woman has to suffer the same upsets, the same heartbreak, the same trauma. The same nightmares.

No mother should ever be told by a panel of consultants their recommendation to ‘withdraw treatment’ for their child while that same panel of consultants stands, mouth agape as the mother lies crumpled on the floor, sobbing as though her heart has been ripped out of her chest. Which it has.

No mother should have to be told dismissively “all mothers feel guilty”, as if that is a salve on their pain.

No mother should have to read in a referral letter inaccuracies about the details of her son’s life and death, and for the GP who wrote it to phone her to apologise with the excuse that they did not read her notes because they were ‘too busy’.

No mother should be made to feel like she is abnormal because of what the trauma of her own life-threatening illness and grief over the death of her son has done to her mind. Instead, she should receive compassionate support to help her understand, and live with the trauma.

This is part of my story, a snapshot of my life and experiences since February 2014. There is nothing that can be done to undo what happened to me, or to Hugo. There is nothing that can be done to bring Hugo back.

But there are things that can be done to prevent other women suffering such unnecessary additional upset and torment.

That is why I would like the National Maternity Review to read, to listen, and to take account of my experiences.

Like this:

Phew! This week has been manic. It has shown me a glimpse of how it feels to be a working mum. My blog and #HugosLegacy work is like my baby in the sense of how they occupy my time, and I like to help them grow and flourish in the absence of a living child to care for.

Return to Work

This Tuesday was supposed to have marked my return to work after 15 months. Understandably, this was something I was very nervous about, and I had done my best to prepare.

Unfortunately my return to work had to be postponed by a day because Martin has somehow hurt his back. I took him to A&E on Tuesday morning because he was in so much pain and could barely move. It transpires he has a problem with his femoral nerve; bless him, he is still in lots of pain and discomfort, and it is one of those things that is difficult to do much about in the short term.

The postponement was one of those things in life that cannot be helped. It meant I needed to psych myself up twice over; on Wednesday morning I was incredibly nervous.

As with many things, the anticipation was worse than the reality. Just going to work, crossing that threshold marked a major psychological achievement for me.

Preparing my bag for work – including a framed photo of Hugo, of course.

I am fortunate that my manager, my team, and my colleagues are wonderful, kind, supportive people. I have been welcomed back with hugs, been told I have been missed and that is good to have me back. The return has so far been low-key, with people being very sensitive to my needs by not probing too far, and reassuring me it is fine to take time out, time away if needed.

A positive development is that I will be working mainly on patient information and experience, which is my passion and offers another opportunity to make a difference.

About to leave for work on my first day.

I am doing a phased return for the first few weeks to help me get back in to the swing of things. There are bound to be plenty of ups and downs, but possibly the most challenging part – starting back again – has been done.

#MatExp and #FlamingJune

June is a month of action for the #MatExp campaign. Every month, technically, is about action of course but June has been dedicated to action as a way of maintaining the brilliant momentum the campaign has already attracted.

On Monday we launched the new MatExp website. I had started building it only the previous Wednesday – it has been quite a project! Fortunately my fellow volunteers on the campaign are a wonderful, inspirational, hard working lot. We – the wider #MatExp community – are passionate about making a difference to women and their families.

I was honoured to be asked by lovely Rosey to co-host #PNDHour about baby loss on Wednesday evening. #PNDHour is a brilliant Twitter concept created by Rosey to provide mutual support for those experiencing all kinds of pregnancy-related mental health issues.

The number of people – those who had experienced loss at all stages of pregnancy, and after, as well as those who had not lost a baby but wanted to know how to better support those who have – was incredible. It became difficult to keep up, and the chat lasted a lot longer than an hour because there were so many sad experiences shared and support needed. Tweeters talked about the taboo that still surrounds baby loss and feeling unable to talk openly about their babies, and the struggle to find support to help them move forward after their loss.

I will be compiling a more detailed summary on my blog soon – there are several areas for improvement around the provision of and signposting to better emotional support after loss. The chat also highlighted that health professionals also need better support to support women and their families. These tweets give a flavour of the discussion – I will link it with #MatExp.

I found out I am a finalist in the MAD Blog Awards just before #PNDHour was due to start. I had just enough time to say “Wow!” before I had to get tweeting! I am so proud and pleasantly surprised to be a finalist – please would you consider voting for me?

So, that’s my manic week! I am pretty shattered now, and going forward trying to figure out how to find a balance with everything.

Like this:

Raising awareness of issues affecting premature babies and their families is something I am very passionate about. I am pleased that today’s Life After comes from wonderful Catriona of the brilliant Smallest Things, which is focused on campaigning for babies born too soon. Here, Catriona writes about what happened after her first son was born much earlier than expected, and his stay in the neonatal intensive care unit (NICU).

Thank you, Catriona, for sharing your story and helping shed light on the life of premature babies and their parents.

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I was just six and a half months pregnant (exactly 30 weeks) when my first son was born. I hadn’t got the crib in which he would sleep, no baby grows or snuggly toys and my maternity leave was still weeks away. I wasn’t ready, but he was in a hurry!

My waters had broken at home and I had calmly taken a taxi to the hospital. I was in a state of shock, perhaps also in denial – this couldn’t really be happening, could it?

When the midwife told me my baby would be born very soon I still remember my words – ‘But I don’t have anything to dress him in’. My first instinct was to care and provide for him. I reached out to him when he was born, but he was whisked away to neonatal intensive care where a machine would breathe for him and an incubator would shield him from the outside world into which he was born so early.

He spent eight long weeks in neonatal care; but for those eight weeks, time and the world seemed to stand still.

Our life became the neonatal unit. The monitors, machines, incubators and tubes. The nurses and doctors, expressing and sterilising. Bottles and boobs, numbers and charts. Eight long weeks and the outside world ceased to exist. Our world was in the hospital fighting and growing.

The relief of ‘making it through’, of finally getting there and making it home was damped by the growing realisation that I was a NICU mum.

It seems strange to write about life after neonatal care, when in reality the journey continues.

I struggled to reconcile what should have been one of the happiest moments of my life, the joy of a new baby, with the reality of trauma, resuscitation, life support machines and emptiness. Pangs of jealousy crept in seeing heavily pregnant women and new baby photos were suddenly everywhere I looked. Sometimes I was consumed with grief and anger at my lost months of pregnancy, the lost time to prepare and the lost time with my baby. For a long time I was haunted by a dull ache on my chest where my baby should have laid his head.

As time went by the anger and grief settled, helped in part by learning that I was not alone in these thoughts; indeed they are common to many women following birth trauma or time spent in NICU. The dull ache on my chest no longer plagues me, although sometimes I wish it did. Instead it has been replaced by something much more unpredictable and invasive – anxiety and post-traumatic stress.

For parents of babies born too soon the slightest cough or cold can cause untold worry. For me, coughs and colds are synonyms with repeat hospital admissions and breathing difficulties; all contributing to vivid flash backs of alarming monitors, breathing tubes and the mechanical rise and fall of tiny chests. This is the untold story of neonatal care and this is how life after NICU can seem for many women. This is why I created and set up the Smallest Things Campaign last year. I didn’t want other mothers like me to happen to stumble across a website in order to discover that the feelings they were experiencing were completely normal and shared by many others. Instead mums should be supported throughout their NICU journey and yes, this means following discharge home.

For me life after NICU isn’t really life after NICU; it is a life-long membership to the Preemie Club, a former NICU mum through and through. I am fiercely proud of my boys, both born early, and am in awe of what I have seen them achieve. Yet even when they are well anxiety and PTSD is always lurking in the background. The journey and life after NICU continues…..

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If you would like to share your Life After…story, please get in touch: